Since
my last blogpost on the stages of ME, some of you have raised
questions about cases that sadly don't ever seem to go into
remission, or improve enough for people to enjoy a reasonable quality
of life. That's what I am addressing here, grounded both in my own
experience and in the knowledge of others. It is part of the spectrum
of this disease, and we need to see the whole picture.

I
first met microbiologist and ME specialist Dr Elizabeth Dowsett in
1985 when she diagnosed me with ME. Shortly afterwards, she
telephoned with the news that my blood tests had revealed a recent
infection and several weeks after that, other tests, being analysed
as part of a research procedure, showed that the causal agent was the
enterovirus (or gut virus) Coxsackie B. In ME, it often is, as she
explained. Coxsackie viruses are related to polioviruses, being part
of the same family.

What
I didn't know at the time – do any of us? - was that mine would
develop into almost the worst case of ME that Dr Dowsett had ever
seen. I won't attempt to describe that here, although I do intend to
publish a personal memoir to convey something of the dramatic
severity and trauma associated with that level of disease.

When,
years later, I came to interview Dr Dowsett, after a painful
endurance test while my body struggled to repair itself, she made
clear to me that whilst the body will do its best for us, sometimes
it just can't get the job done.

If
she was right about the persistence of virus in our tissues (and I
have no reason to think she wasn't, given Dr John Chia's discoveries
of viral particles persisting many years later in the stomach lining
of patients) then we never truly 'recover' in
the pure
terms of totally eliminating the invading organism.
But that happens with
other organisms too, such as the herpes virus that causes some people
to get recurrent cold sores when they are run down. Most of the time
it doesn't bother them. This is a way that the body has learned to
accommodate invaders rather than always mounting a deadly battle.

Some
people who have been through ME seem to reach
periods in their
lives when they
joyfully find themselves
capable of physical things they
thought they
wouldn't be able to do again. After
the worst years, some of us
find other, gentler,
physical things to replace those we can no
longer manage. Can
we call any of this
'recovery'?
It's an odd word, as people use it in their own way, and even
researchers have to
define what they mean by
recovery, which might not
be what we would mean.

I
have limitations that have never totally gone, and I live my life
around certain restrictions. The R word is bandied around too
loosely, but if by 'recover' we mean that we are totally 'over it'
forever, then that idea
does not seem to be
reflected in what
happens inside
the body. What can
happen is an accommodation with the virus that
caused the ME in the first place,
a sort of equilibrium. This balance,
however, can be upset, and indeed, is apparently not reached in every
case.

If
you haven't read my previous blog post IT'S
THE IMMUNE SYSTEM, RIGHT?
I would prefer that you read it now, before continuing with this one.
It's not all that long. Just scroll down and look through it. Because
the next few paragraphs are a bit scary, and if you're feeling upset,
miserable or frightened because of what's happening to your body,
it's a good idea to
reassure yourself by learning how
the 'tendency' in
ME (as explained to me by
Dr Dowsett) is for the body to
improve over time as it
tries to do what it's
programmed to do – heal us. Often this happens in spite
of, rather than because of, any therapies or medications or
alternative treatments that others recommend.

The
body has been injured, damaged. We must
look after it, love
it, praise it and trust it to do its very best. We must take good
care of ourselves and not let people pressurize us into doing things
that will interfere with that healing process.

The
last thing we want is to
provoke a deterioration, even as we naturally try new things when
they seem possible.
Keeping a balance is
important. As I've
personally experienced, once a
serious setback has
happened, it can be a long haul to get back to our previous level of
improvement. And we don't even know if we'll get there; uncertainty
is perhaps the worst thing of all. What will my future be? We
must give it our best shot.

Go
off now and read my previous blogpost...

Welcome
back. I hope you found
that information encouraging. We
must, however, validate the experience of those who do not 'recover',
for no fault of their own. And we must not hide away the unpalatable
truth, that some people suffer continually in darkened rooms unseen
by the world. As the Chief Medical Officer's Working Group Report
stated in 2002: Overall,
there is wide variation in the duration of the illness, with some
people recovering [that
word again] in
less than two years, while others remain ill after several decades. A
minority of those with CFS/ME remain permanently severely disabled
and dependent on others.

That
is a sobering statement. Dr Melvin Ramsay wrote of the spectrum of
cases, including one case that had at the time of writing lasted 40
years. He stated: I am
fully satisfied that at a conservative estimate 25% of victims of ME
have had the disease for 10 years or more. Only Myalgic
Encephalomyelitis has such a legacy.

Ramsay
was comparing the real, classic, historic ME with other forms of
postviral syndrome. Dr Chia's 21
century work corroborates what Ramsay documented, showing double
stranded enteroviral RNA present in the stomach lining of patients
after 10 years. He is quite adamant that this is a causal
relationship, with the level of symptoms reflecting the degree of
what I would call infestation.

Ramsay
describes two forms of chronic ME. One form shows
a recurring cycle of remission and relapse,
with remissions lasting as long as three years in his experience. The
second form is
more tragic in that no remission occurs. He
talks of the restricted lifestyle of these patients, and adds:
A few of these chronic cases are compelled to sleep upright as a
result of permanent weakness of the intercostal and abdominal recti
musculature.

I
myself find it more comfortable not to lie totally
flat when sleeping, and
this is a fascinating analysis of why that might be. Despite the
persisting weakness in some of my muscles, I am constantly amazed at
what my body has managed to achieve. But I try not to take it for
granted.

What
have others had to say? In a paper published in 1994 by the
Nightingale Foundation in Canada, Byron Hyde MD and his colleagues
reported that out of 1826 respondents to their survey, the average
length of illness was approximately seven years. They found only a
two per cent recovery, which, they said, 'suggests that the
large number of pharmaceuticals, alternative medicines and various
treatments used' had been 'largely ineffective'. We are now 21 years
on from that statement, and if anything, we are in a worse situation,
with exercise regimes and psychological therapy having provided one
huge distraction. We see muddled terminology, mixing of patient
groups under the banner of 'CFS', and often misguided treatment. I
particularly see this in regular reports from parents stating that
their children have been made worse.

In
my view, until both the research establishment and Government truly
accept the viral nature of this illness, and do something about
developing targeted antivirals, and vaccinations, as they have done
in other serious disease, it will continue to be down to us as
individuals and families to resist over-demand and to insist on
taking the very best care of ourselves in order to maximise our
chances of 'recovery'.

In
my book, I am revisiting
my interview with Dr Dowsett and her work. She
goes into some detail
about the dangers
of ignoring the true nature of ME, and what that can lead to.Which is not nice. Not nice at all.

ME
has to be taken seriously. That's why I continue to shout about it.
To anyone who will listen.